Our baby girl Cessely was born April 29th 2011 the day of the royal wedding how lovely this little angel was meant to be here seeing how we werent expecting her at all!
i went into labor at 35wks which is no surprise because i had been on bedrest she was able to start feedings a day or so after birth within a lil over 24hrs after the feedings started a nurse noticed that Cessely had blood in her stools and wasnt really feeling like eating that did a x-ray that later showed possibilty of nec i got the call from the nurse saying that she would be transferd to UCSF hospital 1hr and a half away after hanging up the phone i dropped to my knees and cryed praying to God that everything would be alright my husband and i packed up and took off the next day the infection really hit hard and we were told that our daughter might not make it and to come and say our goodbyes i remember sitting in that room surrounded by a team of doctors telling us how sick she is never in my life did i think that i would be one of those people who had a child fighting to live i felt out of my body you no how on movies when something dramatic happens and poeple are talking but the person in shock doesnt hear anything yea that was a me i was a complete wreck i was weak sick to my stomach i finally couldnt carry the weigh of the news anymore and gave it all to god soon after doing this Cessely begin to make a turn around overtime not needing blood transfusions blood pressure meds a ventilator morphine or antibiotics so with trusting God and many prayers or little princess is pulling through day by day its May 27th 2011 and we are still here at UCSF IN california but shes stable and headed in the right direction she will probably start feeds within a 2-3wks so keep baby Cessely in Prayer we believe that shes here to show the Doctors a miracle
God Heals

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My baby girl, Madelynn, was born on April 1, 2011. She was 10 weeks and 3 days early, weighing 2 lbs 10 oz. I had severe pre-eclampsia and had been hospitalized for 8 days before the BP medication stopped working and I had to be delivered. Madelynn developed an isolated perforation on April 4th and had emergency gut surgery. During that surgery they really thought they would find NEC but did not. She had a tiny hole in her stomach, most likely from her feeding tube or the CPAP machine or a combination of them both. The surgeons during that surgery took everything out and examined her entire gut. She was perfectly fine. Within a week she had a contrast die study done that showed her stomach was healed and feedings then started that afternoon. Breast milk only… I pumped religiously to make sure there was always plenty in supply at the NICU. I still have 1/2 of a gallon in my freezer at home.

After about 3 days of feedings she was still not having bowel movements so they decided to give her a barrium enema. During the procedure they said everything still looked great. That was April 18th. That afternoon she had several bowel movements. I had never been so happy. I was one of the mothers that was at the NICU as often as possible. Most days from 8 to 11 hours and every single day. We did kangaroo care and also began breast feeding practice on April 21st. Madelynn was gaining weight and doing great. Every day was weight increases, bowel movements every 3 hours, tolerating feedings and off and on with her breast feeding attempts. Always 10 minutes at least but she was just a sweet and silly baby. Most of the time I just don’t think she was hungry and just wanted to visit and look at me while I talked to her.

On May 9th and 10th, her blood count was up and down. They were doing lab work ups regularly and her body was just not reproducing enough blood. On May 11th afternoon she was given a small blood transfusion. The purpose was to give her a little extra energy and get her lab work looking better. She had also been having small spells of apnea which she was recovering on her own and they thought the transfusion would help with that as well.

At 3AM on May 12th, at 4 lbs 3 oz, she was diagnosed with NEC. Her gestational age with 35 weeks and 3 days. Her age was 5 weeks and 6 days old. I woke up for no reason at home in a panic. I called and the NICU nurse practioner said they had just ordered xrays.

At 12AM every night Madelynn would have a time where she was wide awake and that night was no exception. The nurses would talk with her and play with her. There was absolutely no symptoms. She had just had a regular bowel movement at 12:30 or so and fine.

At 4:30 I reached the NICU and her belly was so extended and her skin color was turning a greenish color. Antiobiotics were being given through an IV. They had to order blood for her for surgery. Surgery began at 11AM. At 1:30PM, my husband and I were told that there was nothing they could do for her. NEC had taken my daughter’s gut in minutes that early morning. At 4:11 PM she died.

This is a terrible disease. I spent every day from April 5th (when I was released after my c-section) to May 12th with my daughter and I never heard NEC or Necrotizing Entercolitis once. Madelynn healed 3 heart murmurs in her almost 6 weeks of life and I knew every single thing about them. But not once was I told that this could happen. I would have been looking for signs.

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Our daughter, Avalon Rowland, was diagnosed with nec a couple of weeks ago. i began reading up online about the condition and although i always try to bear in mind reading things online that more of the negative stories get told than the positiive ones, it was still a very scary time. therefore, i just wanted to let everyone know that in Avalon’s case, she is much better now. cant believe in a couple of days she went from being fine to being on morphene, stopping feeds and having ventilator and this week, she’s back to breathing on her own, no pain, no morphene, feeding and gaining weight again. her infection levels were up a little yesterday but it seems to happen when they put a long line in her but they’ve taken it out again now. overall though, doing really well. i hope one day they find out what causes nec and develop the knowledge and treatments for it, but for those that it would come to late for, my deepest sympathy

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My daughter was born August 15th 2010 at 40 weeks. She weighed 7lbs 1oz. She looked absolutely healthy but inside she was not, thy took her to the nursery to do routine blood work on her and from there it went downhill. The doctor said they were keeping her in the nursery to do some more observations on her. Over the night she had been having bloody stools so her doctor came in and said she was being moved up to the NICU. Come to find out she was diagnosed with NEC. I had never heard of that before so I did not kno anything about it. She was not able to eat for 2 weeks while they were giving her antibiotics. After the 2weeks she started feeding and did good for the most part except she kept acting like it hurt her when she ate. So they did another Xray and found out her stomach is slow to empty. So after being full term and in the NICU for 5 weeks she was able to come home with us. We are still very worried and nervous hoping that it does not come back.

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Unlike many NEC babies, Luke Timothy was considered full-term when he was born on September 18, 2009, at 36 weeks, 3 days. But, due to growth restriction in utero (IUGR), he was a tiny 3lbs. 9oz.

The neonatologists kept telling us that he was at risk of developing NEC, but with each passing day, his chances were lowered. On day eight, he had difficulty tolerating his feeds and x-rays confirmed he had gas in his bowel. We held off feeds for 24 hours and began a cocktail of antibiotics. When we reintroduced feeds he did beautifully…and then 12 hours later he turned septic, stopped breathing and had to be resuscitated. At nine days old, he was rushed to Dell Children’s and underwent emergency surgery a few hours later. Our surgeon told us he wasn’t sure what he would find when he opened Luke’s belly, but if we didn’t do something, it was likely Luke’s bowel would perforate and his chances of living dropped dramatically. Luke lost more than 16cm of small bowel and his appendix. Sending him to surgery was the most difficult moment of my life as a mother. No life experience prepares you for that complete and total surrender.

That first week, seeing him intubated, not being able to hold him, watching him fight the infection – it was all excruciatingly hard. During that week, we also learned that Luke’s kidneys were small, he had two holes in his heart, bilateral arachnoid cysts on his brain and it was likely he had a tethered spinal cord. Talk about information overload!

Two weeks following his surgery, we reintroduced feeds. He threw them all up within six hours. So, we waiting another 24 hours and tried again. The NEC came back. We were devastated. We waited yet another week before introducing feeds. That first feeding was filled with a football stadium full of worry. Slowly. Cautiously. We introduced one ml at a time.

After 44 days, we left the NICU with our precious miracle in our arms. Since then, Luke has endured two more bowel surgeries as a direct result of NEC and spine surgery, as well. At nine months, he is a dainty 13 pounds, but he is a fighter. And a complete and total miracle. The baby no one thought would leave the hospital, did. I am humbled as I read the stories of each of these babies who lived, and those who died, from NEC. It is the third ring of hell, but it also allowed me to love Luke and our other four children on a deeper level than I thought possible.

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